Article on ME in Swedish local paper

This is an interview from today with a neurologist and ME-doctor from the hospital Stora Sköndal outside Stockholm in Sweden.

Google translation:

Many see the ME with doubt

Story Sköndal´s neurological rehabilitation clinic in Stockholm is one of few ME clinics in Sweden, and they have a referral stop.

Stora Sköndal neurological rehabilitation clinic, work in teams on ME patients - doctors, occupational therapist, physiotherapist, social worker, psychologist and nurse. One of the doctors is Ulla Lindblom, specialist in neurology. She explains that they received 600 referrals from its inception in June 2015 until December, when they introduced the referral stop. They still have not had time to evaluate everyone.

What treatment, patients with ME (myalgic encephalomyelitis) with you?

- There are no special treatments. Much is symptomatic treatments for example, insomnia and pain. We focus on identifying what patients use their energy. Suddenly, they have a much smaller pouch energy, then it is important to learn to remove unnecessary activity and put their energy on what is important and provides quality of life. Often it means unfortunately rmycket restrictions. But it's so different, some working, others are bedridden 23.5 hours per day.

How does health care on ME patients?

- There are family doctors who are skilled and well-read, but I think that many doctors and others see ME in doubt. They like to think that it is a mental disorder or chronic fatigue syndrome. The disease can affect how you feel physically, but the mental is not the primary.

What needs to be done for these patients?

- Research and information, both directed and wide. Many are badly made of questionable treatment. Primary care must have the opportunity to learn to recognize the disease. It is not realistic that all should come to a specialist. Insurance Agency and the transport service stands also hesitant, they wonder if the disease is found. Many of these patients will perform secured by the Social Insurance Agency.

Yes, the situation is really for ME-patients?

- Many have given up on health care and social insurance office and muddle through and live on their relatives and are invisible in all statistics. I think there are many unreported.

Are you still hopeful?

- Yes absolutely. Much exciting research is ongoing. There is a chance that we can understand the disease better and in the best of worlds find treatment. I am glad a large study in Norway, where they examine the anti-inflammatory medicine Rituximab is that lower levels of certain white blood cells. In previous, smaller studies have shown good results.

Outside the apartment roll life on without the 42-year-old Petra Stafberg can participate. It took six and a half years for her to get the right diagnosis, but it was already too late.
Petra Stafberg lies on her back with a blanket over himself, dressed in sweats and a long braid. Apartment in central Uppsala smells mild and sweet from scented candles. It is cool, standing at the foot balcony door ajar.

- It's nice to get fresh air. It is the only air I get, she says.

When Petra Stafberg wake up in the morning, she moved from the bed in the master bedroom to the daybed in the living room. From there, she sees little of the sky and the neighboring house through the window to his glass-enclosed balcony. Out she comes just a couple of times a year when she absolutely had to. In wheelchair.

This interview, such an effort that she will not be able to walk or talk afterward. But she thinks it's worth it. She wants more people to gain knowledge of her illness, ME.

- It feels like constantly having flu and hangovers while, she describes.

ME is an abbreviation of myalgic encephalomyelitis. Myalgia means muscle pain. Encephalomyelitis is an inflammation of the brain and spinal cord. The disease is classified as a chronic neurological disease. Many sufferers feel that their life is running out of their hands.

In summer it's ten years ago, Petra Stafberg fell ill and three and a half years ago, she became bedridden. When the first symptoms came, she was 32 years old and lived in Oslo. She was a bundle of energy who throughout his adult life had alternated work with travel around the world. Now she no longer roam and bought an apartment she was renovating. To afford it, she had two full-time job as a waitress. The pace was extremely high. When she was completely exhausted thought both she and the doctors that she had chronic fatigue syndrome. She was prescribed exercise, which made her much worse. Only after six and a half years, she received the correct diagnosis.

- The most terrible is that most doctors and nurses do not know what ME is, she says.

If she had been diagnosed earlier, rested instead of exercising, and not pushed himself to work more than the doctors advised her she'd be spared this sick, she believes.

Petra Stafberg is fully isolated and does not need to do anything is she okay.

- OK, on my scale means extreme fatigue and exhaustion, for it is never over.

Whenever she does something, she becomes nauseous and have headaches, tremors and dizziness. Yet she has a surprisingly good mood and laughing a lot during the interview. Mindfulness training has helped her a lot.

- I live here and now and have it so good, I can have it. I'm happy with it. I just would feel bad if I grieved that I can and have. I see glimmers of hope in everything and have learned to live a new life, she says.

The mobile app Instagram is her contact with the outside world. There, she lays out the interior pictures of the apartment. She has over 4000 followers.

- It is on Instagram, I socialize. There I met many new friends. I'm trying to bind the ME people there to get a community, she says.

When she moved back to his hometown of Spring 2014 she chose the apartment with care, at the top of the gable to the courtyard of a newly built house. There, she hears no neighbors. And there are no thresholds, which is good if she will need a walker in the future.

In the morning, home help, when she was still sleeping because she will not have to be exposed to sound. They put breakfast, lunch and dinner in the fridge, fills and empties the dishwasher, wash and clean. Since they do in order a tray of cold and hot water, a large tea cup and a can of tesumpen. It is always on the coffee table to the left of the daybed.

To the right is a shelf with medicines, hand cream, tablet, green teas and more. All she need within reach. Up the steps, she just to go to the bathroom or heat food which she eats in bed.

- The doctor wants me to sit at the kitchen table a few minutes a day, but I can not stand it, she says.

Mom Lis Lindberg sitting with during the interview. She is relieved that her daughter lives in Uppsala now so she can help her. It's lucky that she's retired, she says, because it takes much time to tussle with the Social Insurance Agency and other authorities, the municipality and the transport service for her daughter to get the support she is entitled to.

- They do not understand the disease, that Petra can go but not to go, because then she will be much worse, says Lis Lindberg.

On the wall is a large flat-screen TV. Each day watching Petra Stafberg on Gomorron Sweden to keep up with what's happening in the world. But above all, devour her TV series such as Grey's Anatomy, Orange is the new black, Sons of Anarchy, Good Wife and Downtown Abbey.

- One good thing about this disease is that I can see if the series, because I do not remember. Otherwise they would run out, she says, laughing.

Television is the only thing she can. Reading is difficult. Radio and phone calls do not work.

- I can not only sound, but image, to listen and process what is being said. I suffer from extreme fatigue and brain can not cope with the impression, sound and light, she says.

It is obvious that those who suffer from severe ME is extremely isolated. Petra Stafberg cope with short visits of friends once a month only.

- When they had gone, I feel like run over by a steamroller. It provides the energy also to do something fun and I can live on it for weeks, but I'm incredibly sick, she says.

- It's like saying to a cancer patient is ill with nausea. Chronic fatigue is one of my symptoms.

You do not know what ME is due and there is no cure. It offered are treatments that alleviate symptoms and tips for finding a good balance between activity and rest.

- Pacing is the key, never to use more than 70 percent of its energy, she says.

Throughout the interview keeps the cat Cleo hidden. She is Petra Stafbergs best companion and helps her keep her spirits up. When one gets this disease lose many friends. She has said that they would be happy to send text messages with photos of what they do, but it rarely happens.

- I understand that some believe I will be sorry, "look what we do," but I will be happy to see what's going on out there and be a part of a corner.

What do you dream about?

- That I do not intend to. I do not think "what if", if I had to do like everyone else and have a life. But I would of course be healthy, walk around town, meet friends and socialize with my family without collapsing. Have a life outside and get to travel again.

Petra Stafberg is grateful that she could travel as much before she became ill. She has lots of photos, beautiful souvenirs and travel memories.

- What if I had studied instead, then I had not had anything to live on.

ME affects both men, women and children, but there is an over-representation of women aged 25-40 years. Only ten percent recover completely, but many will be a bit better with time. The prognosis is better for children and young people.

ME sufferers describe an extreme physical and mental exhaustion, often coupled with symptoms like fever, muscle pain, recurring infections, sleep disorders and problems with concentration and memory. The symptoms of impaired effort. Depression can occur as a result of isolation and reduced quality of life.

Source: Health Care Guide in 1177 and the National Association of ME patients.

ME can start with an infection

Often begins myalgic encephalomyelitis, ME, with a severe bacterial or viral infection. A hypothesis in the current research is that some are born sensitive immune systems can develop an autoimmune and auto-inflammatory process after certain infectious diseases. When the immune system attacks its own body.

People with extreme and unexplained fatigue for more than six months can be investigated for ME. Diagnosis is by that certain criteria are met and other diseases with similar symptoms ruled out by a thorough investigation. However, few physicians knowledge about ME. On the website viss.nu is what primary health care is expected to do the basic investigation of a patient suspected of having ME.

Source: Health Care Guide in 1177 and the National Association of ME patients.

patient Organization

The National Society for ME patients is a nonprofit organization with the aim of increasing knowledge about the disease myalgic encephalomyelitis, ME. They also provide support and advice to victims and their relatives. The association has nearly 1800 members. In Uppsala there is a support group. Read more on www.rme.nu.

Researchers are looking diagnostics tools

At the beginning of the year started a new research collaboration between the University Hospital, Karolinska Institute and ME / CFS clinic at Neurological Rehabilitation Clinic Stora Sköndal. The group includes the Uppsala researchers Jonas Bergquist, professor of analytical chemistry and neurochemistry and Jonas Blomberg, professor emeritus of clinical virology. They should look for changes in proteins in the spinal fluid and antibodies against viruses and bacteria, known as biomarkers, in blood specimens from the ME patients. The aim is to develop tools for the diagnosis of ME (myalgic encephalomyelitis).

Florence Nightingale may have had ME

On May 12, the international ME / CFS-day, on Florence Nightingale's birthday. The 35-year-old Florence was chronically ill with a disease similar to ME / CFS. The rest of its 90-year life, she spent largely bedridden.